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From Department of Clinical Science and Education, Södersjukhuset Karolinska Institutet, Stockholm, Sweden

NON-CONVEYED PATIENTS - A THESIS ON EPIDEMIOLOGY, AND PATIENTS’ AND AMBULANCE CLINICIANS’ EXPERIENCES

Jakob Lederman

Stockholm 2020

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All previously published papers were reproduced with permission from the publisher.

Published by Karolinska Institutet.

Printed by Universitetsservice US-AB, 2020

© Jakob Lederman, 2020 ISBN 978-91-8016-042-1

Cover illustration: photo by Gyro on istockphoto.com

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Non-conveyed patients - A thesis on epidemiology, and patients’ and ambulance clinicians’ experiences

THESIS FOR DOCTORAL DEGREE (Ph.D.)

By

Jakob Lederman

Location: Aulan at Södersjukhuset, KI SÖS, Sjukhusbacken 10, 118 83 Stockholm, Sweden

Date: 18 December 2020, 13:00

Principal Supervisor:

Assoc. Professor Carina Elmqvist Linnaeus University

Department of Health and Caring Sciences, Faculty of Health and Life Science

Co-supervisor(s):

Assoc. Professor Therese Djärv Karolinska Institutet

Department of Medicine Solna

Assoc. Professor Veronica Lindström Karolinska Institutet

Department of Neurobiology, Care Sciences and Society, section of nursing

Division of Nursing

PhD Caroline Löfvenmark Sophiahemmet University

Department of Health promoting science

Opponent:

Professor Erika Frischknecht Christensen Aalborg University

Department of Clinical Medicine Faculty of Medicine

Examination Board:

Professor Anna Forsberg Lund University

Department of Health Sciences

Assoc. Professor Bodil Ivarsson Lund University

Department of Cardiothoracic Surgery

Assoc. Professor Zarina Nahar Kabir Karolinska Institutet

Department of Neurobiology, Care Sciences and Society

Division of Nursing

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To Hanna, Elias, Jonathan and Joshua

“We can be blind to the obvious, and we are also blind to our blindness.”

Daniel Kahneman, psychologist and Nobel Prize winner

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ABSTRACT

BACKGROUND

As a consequence of the increased overall number of ambulance assignments in

combination with an increase in patients assessed as having non-urgent complaints, new demands are being placed on the ambulance service and the ambulance clinicians (ACs) regarding patient assessments and decisions. Alternative care pathways – excluding emergency departments (EDs) – such as non-conveyance, have increased over the last decade. However, knowledge regarding non-conveyance is limited. Increased knowledge from an epidemiological and qualitative research perspective is needed to enhance patient safety.

AIM

The overall aim was to explore situations in which patients were non-conveyed.

Furthermore, it was intended to describe ACs and patients’ lived experiences of non- conveyance.

METHODS

Four sub-studies were performed. Study I was an observational population-based study with the aim of describing the prevalence of non-conveyance, investigating associations and comparing patients’ characteristics, drug administration, initial problems, and vital signs between non-conveyed and conveyed patients. Patient data were retrieved from ambulance medical records (CAK-net, Region Stockholm). Study II was a retrospective cohort study with the aim of increasing the understanding of elderly non-conveyed patients.

The primary objective of this study was to present the prevalence of older adult non- conveyed patients and their characteristics – in comparison with younger non-conveyed patients – and identify and describe the risk factors associated with ED visits,

hospitalisations, and mortality up to 7 days following non-conveyance. The secondary objective was to investigate the probable associations between abnormal vital signs and ED visits, hospitalisations, and mortality up to 7 days after non-conveyance among older adult non-conveyed patients. Patient data were retrieved from the ambulance medical records, and follow-up data were retrieved from The Regional Health Care Data Warehouse (VAL).

Study III was an interview study of ACs conducted using a reflective lifeworld research (RLR) approach based on phenomenology. The aim was to describe ACs experiences of assessing non-conveyed patients. Study IV was also an interview study conducted using an

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RLR approach. The aim was to describe experiences of becoming acutely ill and not accompanying the ambulance to a hospital from a non-conveyed patient perspective.

RESULTS

The results show that non-conveyance situations represent a non-negligible proportion of all ambulance assignments performed annually. Non-conveyance constitutes a complex caring encounter involving a great diversity of patients with variating characteristics and complaints. Ambulance assignments ending in non-conveyance were often dispatched as the highest priority – involving overall younger individuals – and patients’ medical

complaints were often assessed as non-specific or related to psychiatric problems (Study I).

Older non-conveyed adults represent a risk group for adverse events that need to be met with adequate measures to ensure patient safety. The observed increased risk of

hospitalisation and mortality among older adult patients compared to younger adult non- conveyed patients raises questions pertinent to patient safety (Study II). Furthermore, insufficient organisational support, a lack of non-conveyance education, and an absence of clinical performance feedback complicate ACs ability to perform accurate and person- centred non-conveyance assessments (Study III). Patients’ experiences of non-conveyance showed it to be a complex and versatile phenomenon in which patients need to be met with an ethical mindset in the creation of a caring encounter. Patients that are non-conveyed experience an existential fear and loss of bodily control that need to be met with confirmation, listening, and the establishment of a partnership (Study IV).

CONCLUSIONS

Several conclusions with clinical implications stem from this thesis, including increased awareness and knowledge regarding the large group of patients with varying characteristics, complaints, and symptoms that are non-conveyed annually. Older adults that are non-

conveyed were identified as a risk group for adverse events that need to be met with adequate measures to ensure patient safety. Performing non-conveyance assessments is complicated by several paradoxes that need to be met with sufficient organisational support, educational efforts, and the introduction of clinical performance feedback in order to

perform person-centred care, ensure patient safety, and enhance professional development among ACs. Non-conveyance encounters are complex care meetings in which several existential aspects deemed important for non-conveyed patients need to be met in order to establish caring encounters based on person-centred care.

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LIST OF SCIENTIFIC PAPERS

I. I Lederman J, Lindström V, Elmqvist C, et al. Non-conveyance in the ambulance service: a population-based cohort study in Stockholm, Sweden. BMJ Open 2020;10:1–9. doi:10.1136/bmjopen-2019-036659

II. II Lederman J, Lindström V, Elmqvist C, et al. Non-conveyance of older adult patients and association with subsequent clinical and adverse events after initial assessment by ambulance clinicians: A cohort analysis. Submitted 2020.

III. III Lederman J, Löfvenmark C, Djärv T, et al. Assessing non-conveyed patients in the ambulance service: a phenomenological interview study with Swedish ambulance clinicians. BMJ Open 2019;9:1–8.

doi:10.1136/bmjopen-2019-030203

IV. IV Lederman J, Löfvenmark C, Djärv T, et al. Non-conveyed patients in the ambulance service – a phenomenological interview study with patients cared for by Swedish ambulance clinicians. Submitted 2020.

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CONTENTS

1 Introduction ... 1

2 Literature review ... 3

2.1 The Swedish ambulance service – organisations in transition ... 3

2.2 Non-conveyance – an unexplored form of ambulance care ... 4

2.3 Nursing assessments and judgements ... 5

2.4 Clinical assessments and judgements in the ambulance service ... 5

2.5 The decision-making process and non-conveyance ... 6

2.6 Non-conveyance protocol (guidelines), vital signs, and medical records ... 7

2.7 Regional medical guidelines and non-conveyance protocol ... 9

2.8 Patient safety and re-entries in the (emergency) healthcare system ... 10

2.9 Non-conveyance experiences of patients and ambulance clinicians ... 11

3 Rationale ... 14

4 Aims ... 14

5 Ethical considerations ... 15

6 Methods ... 16

6.1 Setting – the Stockholm region... 16

6.2 Healthcare system of the Stockholm region ... 16

6.3 The ambulance service of the Stockholm region ... 17

6.4 Studies I and II ... 17

6.4.1 Registers ... 17

6.4.2 Study populations ... 18

6.4.3 Data collection ... 20

6.4.4 Study designs and outcomes ... 21

6.4.5 Statistical analysis... 21

6.5 Studies III and IV ... 22

6.5.1 Reflective lifeworld research and preunderstanding ... 22

6.5.2 Managing my preunderstanding ... 23

6.5.3 Informants ... 23

6.5.4 Data collection ... 25

6.5.5 Data analysis... 25

7 Results ... 26

7.1 Study I: ‘Non-conveyance in the ambulance service: a population-based cohort study in Stockholm, Sweden’ ... 26

7.1.1 Main findings ... 27

7.2 Study II: ‘Non-conveyance of older adult patients and association with subsequent clinical and adverse events after initial assessment by ambulance clinicians: A cohort analysis’... 27

7.2.1 Main findings ... 27 7.3 Study III: ‘Assessing non-conveyed patients in the ambulance service – a

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7.3.1 Main findings ... 28

7.4 Study IV: ‘Patients being non-conveyed in the ambulance service – a phenomenological interview study’ ... 29

7.4.1 Main findings ... 29

7.5 A narrative compilation ... 29

8 Methodological considerations ... 31

8.1 Epidemiology ... 31

8.2 Reflective lifeworld research ... 33

9 Discussion ... 35

9.1 Main findings... 35

9.2 Non-conveyance and patient safety ... 36

9.3 The person behind the patient ... 38

9.4 Mutual knowledge gap ... 41

10 Conclusions ... 43

10.1 Clinical implications ... 44

10.2 Future research ... 44

11 Svensk sammanfattning ... 45

12 Acknowledgements ... 47

13 References ... 53

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LIST OF ABBREVIATIONS AND DEFINITIONS

AC AOR CI COR ED

Ambulance clinician Adjusted odds ratio Confidence interval Crude odds ratio

Emergency Department EMCC

EMT IQR NACA OR RETTS

Emergency Medical Communication Centre Emergency medical technician

Interquartile range

National Advisory Committee for Aeronautics score Odds ratio

Rapid Emergency Triage and Treatment System RLR

VAL

Reflective lifeworld research

The Regional Health Care Data Warehouse

Non-conveyance – The definition of non-conveyance within the ambulance service used by the National Health Service in England, that is, “a term used to describe a 999 call to the ambulance service which results in a decision not to transport the patient to a health-care facility” [1], will be applied in this thesis and also includes alternative terms describing non-conveyance, i.e. ‘non-transport’.

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1 INTRODUCTION

A growing body of research recognises the importance of and need for deepened

knowledge regarding assessments of patients leading up to a non-conveyance decision in an ambulance service context [2,3]. Over one million ambulance missions are performed in Sweden annually [4]. Fewer than half of these missions were assessed as life-threatening.

Consequently, a majority of all ambulance missions were categorised as non-urgent by the emergency medical communication centre (EMCC) [5]. Furthermore, ambulance

clinicians’ (ACs) assessments concerning the severity of patients’ medical conditions are markedly distinct from the EMCC operator’s assessments [6]. However, it is of importance to note that the EMCC uses a triage tool different from that of the ambulance service.

Categorising and prioritizing individuals' care needs by telephone is a challenging task performed by EMCC operators [7]. Once the ACs meet the patients, fewer than one third of all patients are reported as severely ill [8]. As a consequence of the increased overall

number of ambulance assignments in combination with an increase in patients assessed as having non-urgent complaints, new demands are being made on the ambulance service and the ACs regarding patient assessments and decisions.

In the past, the default final destinations for patients cared for by Swedish ambulance services were emergency departments (EDs) [9,10]. However, crowded EDs have been identified as a risk for patients assessed as having low acuity complaints [11]. Within the ambulance service, alternative care pathways have been introduced over the last 10 years [12–14], and non-conveyance is one of the fastest-growing pathways and the one on which knowledge is still most limited [15]. From a patient perspective, accurate non-conveyance assessments may help patients to find the necessary care in a reasonable period of time and thus avoid the ED if appropriate [13,16–18]. Further, incorrect non-conveyance decisions can adversely affect patients’ health and, in some cases, even lead to death [2,19]. Patient safety issues regarding non-conveyance have been expressed both internationally [1] and nationally in Sweden [20]. Furthermore, in a broad Dutch consensus study, non-conveyance assessments were identified and highlighted as one of the most neglected and therefore prioritized areas for future research [3]. Consequently, due to organisational and

educational similarities between The Netherlands and Sweden, this may also apply to the Swedish ambulance services.

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2 LITERATURE REVIEW

2.1 THE SWEDISH AMBULANCE SERVICE – ORGANISATIONS IN TRANSITION Descriptions of something resembling ambulance care can be found in the Bible and the story of the Good Samaritan (Luke 10:34, 2016). Nearly 1,800 years after Luke was written, Dominique-Jean Larrey, chief surgeon for Napoleon’s fighting forces formed the world’s first organised ambulance organisation. Civil ambulances were to be found in London in the 1880s. At the end of the 19th century, Stockholm had just a few ambulances reserved for patients with highly infectious and fatal diseases, such as cholera and smallpox [22]. The Swedish ambulance services underwent a process of intensive change during the end of the 20th century and the beginning of the 21st century. The result of this developing process can be seen in today’s Swedish ambulance services, where formal regulations stipulate that the administration of drugs is reserved for registered clinicians only [23].

Therefore, a change occurred in 2005 regarding the ACs’ formal competence: all Swedish ambulance services underwent a change from an emergency medical technician-based (EMT) organisation to a nurse-based ambulance service. Today, Swedish ambulances are crewed with at least one registered nurse. Thus, several counties – the Stockholm region included – have increased the formal requirements regarding the ACs’ level of competence.

Since 2009, the regional formal requirements in the Stockholm region have stated that at least one of the two members in the ambulance crew is obliged to pass an advanced level exam at a university (e.g. specialist nurses in ambulance care, anaesthesia, or intensive care) [24]. In accordance with the Swedish Higher Education act [25] a specialist nurse in ambulance care should have ‘the ability to independently assess the sick/injured somatic and mental status and immediate needs as well as implement the measures which are required for patients of all ages under strongly varying conditions’. The increase in competence within the ambulance service is one important part of facilitating a change in emergency care to move the advanced care closer to the patient. To move the starting point of the advanced care from the ED to the EMCC and the ambulance services requires several other additional actions, such as educational initiatives, additional training in non-

conveyance assessments, and the performing of high-quality research, whose results are to be implemented in the regional ambulance organisations [26].

In order to meet each patient as a person [27], and in relation to crowded EDs [28] the ambulance services must actively work to offer each patient an individual solution that is

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based on the patients’ individual needs. The services should more often exclude the ED as the final destination when appropriate [26,29]. The most fragile individuals in society – the elderly population – are exposed to physical and existential suffering when routinely transported to an ED instead of being offered individual care based on their own unique needs [12,30,31].

Several studies have reported positive patient outcomes following ACs’ use of alternative care pathways instead of an ED [12,32,33], but other studies contradict these results [16,34]. Older adults having suffered a fall were found to be at risk of being undertriaged, and therefore an uncertainty regarding ACs ability to assess older adults was highlighted [34]. To routinely transport patients to EDs and thus not offer individualized care might indicate on the one hand a general healthcare organisation that lacks a person-centredness and a lack of structural preconditions for alternative care pathways. On the other hand, it may be a sign of underdeveloped support systems used by ambulance organisations [26].

2.2 NON-CONVEYANCE – AN UNEXPLORED FORM OF AMBULANCE CARE The concept of non-conveyance is found in various ambulance service systems all over the world, and its prevalence is commonly diverted into two further categories: rates for non- conveyance overall and rates for specific non-conveyance patient populations (e.g.

hypoglycaemia, paediatric patients, elderly patients, and post-ictal patients) [2]. The extent of non-conveyance is of interest because the phenomenon is not regarded as an isolated event but instead as a possibly justified outcome in an ambulance care process that is influenced by factors prior to the non-conveyance assessment. Such factors include low accuracy in the EMCC dispatch protocols [7], patients with primary care problems requiring an ambulance [35], and the ACs’ competencies [36]. The rates for general non- conveyance populations varies considerably, and studies have reported rates of 4–94%

[16,17,37–41]. However, these rates are to be viewed with caution due to suspected confounding and differences in how the non-conveyance population was defined and measured. A few published studies have investigated and reported non-conveyance rates in Sweden to be between 12 and 20% [14,42].

While some research has been conducted investigating the overall non-conveyance patient populations, there have been few empirical investigations into specific non-conveyance patient populations (e.g. hypoglycaemia, paediatric patients, elderly patients, and post-ictal patients). Rates for non-conveyed patients with hypoglycaemia have been reported at

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between 12 and 84% [43–47]. The discrepancy in rates can partly be explained by methodological differences between the studies, where the highest rate of 84% examined the care performed by a physician-based mobile intensive care unit without conveyance possibilities [44]. Rates for non-conveyed paediatric patients have been reported at between 13 and 27% [48,49]. Assessing and caring for paediatric patients in an ambulance care context is a considerable challenge for ACs in general [50]. Deciding not to convey paediatric patients is a complex and challenging task for ACs in particular [51]. Varying pathophysiology, possible communication barriers, and parental involvement and perspective are three factors that might explain the complexity in the non-conveyance assessment of paediatric patients [48]. The reported non-conveyance rate for older adults is between 11 and 12% [52]. Moreover, assessing elderly patients’ care needs is a difficult and complex task and requires deep knowledge and understanding of physiological changes occurring with increasing age [52,56]. Overall, patients over 65 represent the majority of all patients cared for by the ambulance service of Stockholm [55]. A similar pattern can also be seen in an international ambulance care context [19,56,57]. Therefore, it is worrying that only a few studies have specifically investigated elderly non-conveyed patients.

2.3 NURSING ASSESSMENTS AND JUDGEMENTS

Two essential elements of everyday nursing are assessments and judgements. Nursing is performed regardless of context. It is most often performed as part of a team in dialogue with the patient, significant others (relatives, close friends), and other healthcare

professionals [58]. Certain skills have been identified as important for conducting clinical assessments and judgements: clinical reflecting, intuition, reasoning, and practical skills based on best practice. In addition, the individual nurse’s level of knowledge and clinical experience is further viewed as important when conducting clinical assessments and judgements with the aim to identifying and fulfilling the individual patient’s needs [59,60].

The outcome of a well-performed process of clinical assessments and judgements are the creation of nursing diagnoses, more effective clinical decision making, and a positive impact on care quality [61]. The nursing interventions planned for and implemented should be evaluated in the aftermath of care [58].

2.4 CLINICAL ASSESSMENTS AND JUDGEMENTS IN THE AMBULANCE SERVICE

Assessments in the ambulance service context have been described from two different perspectives. From the first, the so-called diagnostic reasoning behaviour, the clinician’s assessment is regarded as an analytical decision-making process in which different types of

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standardized assessment tools are used for guidance and collecting and analysing measurable and hence ‘objective’ patient data (e.g. vital signs and clinical examination findings) [62]. Triage methods are examples of this type of assessment approach [63]. In comparison to an experienced nurse’s ability to include different perspectives and aspects in an assessment, triage methods have been shown to account for fewer factors [64].

Assessments stemming from the second perspective are regarded as part of a larger whole:

a process of care in which the patient’s perspective and experiences are included in the assessment [65,66]. Research has indicated that ambulance care is more than medical care:

it has an existential influence on patients [67,68]. Hence, ACs need to possess knowledge in emergency medicine and at the same time have the ability to include a patient’s lifeworld in the assessment [69]. By the nature of ambulance care, where ACs most often care for one patient at a time, there are unique opportunities and circumstances for performing person- centred care [70].

Moreover, clinical reasoning is viewed as an important part of ACs’ assessments. Different problems need different solutions, and clinical reasoning has been described in several different ways: on the one hand, as an unreflecting method as a rapid response to sudden changes in the clinical environment or working under stressful circumstances, and on the other hand as a slower process including a greater amount of reflection and analysis [71].

The latter allows ACs to reflect upon findings and include more information before making a decision. It has been suggested that mistakes made by ACs during the decision-making process are one of the main causes of a negative impact on patient safety in an ambulance service context [72]. Several factors distinguish clinical assessments and judgements – including decision making – in the ambulance service compared to intrahospital emergency care. The environment is a recurrent factor that is independent of location in the world and in which type of ambulance service system is being investigated [73]. Therefore, ACs need to possess ability and an understanding of why an improvised caring space in which the integrity of the patient is ensured should be created [74].

2.5 THE DECISION-MAKING PROCESS AND NON-CONVEYANCE

The decision-making process, which concerns patients’ needs for an appropriate level of care, has been described as a complex process that should combine the patients’, significant others’, the ACs, and the healthcare systems’ perspective and needs [12,75,76]. The ACs’

working environment and clinical reality have been shown to differ significantly from existing non-conveyance guidelines. The latter has a simplified and uniform picture of the

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assessment situation [77–79]. The assessment and decision not to convey patients to an ED require both deep medical knowledge and advanced nursing skills to optimize the outcome for the patient and significant others. Moreover, the decision-making process has been described as a negotiating decision between the patient, significant others, and the ACs.

Furthermore, the ACs must develop and actively implement the ability to combine these different perspectives in their assessment [77,78,80]. However, additional higher training in relation to ambulance care, such as specialist nursing studies at the university, lacks specific content involving non-conveyance assessments, management, and decision-making

processes in its curricula [81]. Hence, opposite expectations to the non-acute ambulance care reality are then formed [82,83]. Studies have suggested that additional non-conveyance training among ACs may result in increased non-conveyance rates [39,40]. However, research evaluating these educational efforts is lacking. Therefore, our knowledge is limited regarding the accuracy of the assessments and the patient outcome from a patient safety perspective.

2.6 NON-CONVEYANCE PROTOCOL (GUIDELINES), VITAL SIGNS, AND MEDICAL RECORDS

Valid non-conveyance guidelines are limited in access: therefore, this may adversely affect patient safety. Furthermore, the use of guidelines not specifically developed for non-

conveyance situations can thus cause insecurity among the ACs when assessing these patients [2,78]. Overall, from an international ambulance service perspective, general non- conveyance guidelines are most commonly used, most often including abnormal vital signs as a basis for the non-conveyance decision [84,85].

The examination of vital signs is considered to be one of several important aspects for conducting an accurate assessment in the ambulance service context [86,87]. Thus, limited knowledge regarding vital signs and non-conveyance assessments is derived from the few studies that have reported non-conveyed patients’ vital signs. Approximately 15–60% of non-conveyed patients have been shown to have abnormal vital signs [16,84,88,89].

Together with older age (> 70 years) and aetiology, abnormal vital signs are a predictor for subsequent events following non-conveyance, such as second ambulance call, ED visit, hospital admission, and to some extent even death [16]. Although some research has investigated vital signs and non-conveyance, there is still limited knowledge and therefore also clinical awareness of what importance abnormal vital signs have for non-conveyed patients and patient safety. Furthermore, to what extent non-conveyed patients’ vital signs

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differ from conveyed patients is still unclear due to the absence of research in the field.

Moreover, the reason that non-conveyed patients present with abnormal vital signs is not known. It is therefore unknown to what extent the vital signs were previously present as a consequence of the slow deterioration of a chronic disease or a sudden onset of an acute illness.

Access to up-to-date patient health information and records is considered to be one crucial factor in performing assessments with a high degree of patient safety [90]. When

performing safe non-conveyance assessments of patients – where patients are offered alternative care pathways based on individual needs, access to patient’s health information and records is considered to be essential [91]. Lack of access to patients’ medical records could initiate an unnecessary conveyance decision despite an existing care plan for the patient. The ambulance service in the region of Stockholm currently lacks the possibility of accessing patients’ medical records, and therefore a possible important part of the non- conveyance assessment could be considered as missing. Meanwhile, the lack of studies comparing eventual differences in patient outcome when having access to patients’ medical records compared to no access makes such an interpretation difficult.

Access to patients’ medical records could be of benefit when caring for a patient with a known disease for which regional specific non-conveyance guidelines are available. Non- conveyance guidelines for specific patient groups are used but not commonly. As with the medical guidelines, the non-conveyance guidelines for a specific patient group – for example, hypoglycaemia and post-ictal patients – lack a clear evidence base [43].

Furthermore, the validity of specific non-conveyance guidelines for post-ictal patients has been questioned due to the increased risk of adverse events [43]. Compliance with these types of expert-based but not evidence-based non-conveyance guidelines might impair patient safety due to low sensitivity and specificity. The common occurrence of guidelines or triage tools in the ambulance service is of a more general basis, hence not developed specifically for the non-conveyance assessment and specific patient groups [2,86]. A non- conveyance guideline exists specifically for patients with hypoglycaemia in the regional medical guidelines for the ambulance service in Stockholm. Thus, the evidence base for this specific guideline is unclear, and the accuracy of the assessments following the guideline is currently unexplored.

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2.7 REGIONAL MEDICAL GUIDELINES AND NON-CONVEYANCE PROTOCOL In the medical guidelines used by the ambulance service in the Stockholm region, the concept of non-conveyance has been divided into two additional levels of care: (1) self-care and (2) reference to alternative care pathways. However, there is no difference between the criteria that should be fulfilled in order to apply non-conveyance. A clarification is made in the guideline for ‘self-care’ where it stipulates that ‘prior to the decision of self-care, a valuation must be made of the patient’s or significant other’s conditions to manage the self- care safely.’ [92]. In addition to the ACs’ assessment, a telephone consultation with an EMCC physician is obligatory prior to the decision not to convey a patient. Furthermore, self-care is not to be applied if there is a risk that the patient can suffer harm due to the decision of self-care [92]. A definition of ‘suffer harm’ is not clarified in the regional medical guidelines, and as a consequence, the absence of valid quality indicators measuring patient safety and non-conveyance becomes evident. Prior to the non-conveyance decision, an assessment including the use of a triage tool named Rapid Emergency Triage and Treatment System (RETTS) is to be performed. The RETTS combines vital signs with the patient’s chief medical complaint, and as a result, a priority level is suggested (Widgren, 2012). The priority level ‘green’ is the lowest used by the ambulance service in the Stockholm region and indicates normal vital signs and most often also an absence of disease. However, RETTS is first and foremost developed for intrahospital use at the ED as an indicator of how long a patient can wait until meeting a physician and not for the

ambulance care context [94]. Furthermore, the use of RETTS in a non-conveyance situation is further problematic due to questions of validity, specificity, and sensitivity. These

perspectives have not yet been scientifically investigated. Moreover, it is not stated in RETTS that patients with a priority level of ‘green’ are not to meet a physician; instead, it is stated that these patients will not be adversely affected by some degree of waiting time due to a non-life-threatening medical complaint and hence are not in need of immediate care [94]. It is therefore problematic to use the RETTS in non-conveyance situations.

The seven criteria below are to be met when deciding not to convey a patient in accordance with the medical guidelines of the ambulance service in the Stockholm region;

• The patient has been triaged green according to RETTS (normal vital signs and absence of illness/injury)

• The patient has the ability to receive information (note dementia, intoxication etc.)

• The patient is able to understand the consequences of what the non-conveyance decision means

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• The patient must have received sufficient information to make a decision (describe options)

• The patient must never be left without their consent

• Patient consent should be obtained without leverage

• Patients also include care-proprietors: for example, when assessing children

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Provided that these seven criteria are fulfilled, the ACs may decide not to convey the patient after a telephone dialogue with the EMCC physician. The above criteria can be considered as a two-fold guideline: on the one hand, a ‘treat and release’ guideline and on the other a ‘see and refer’ guideline, thus with a more general design.

2.8 PATIENT SAFETY AND RE-ENTRIES IN THE (EMERGENCY) HEALTHCARE SYSTEM

In order to explore patient safety in relation to non-conveyance, several studies have aimed to investigate subsequent and/or adverse events following non-conveyance. The follow-up is usually divided into two sub-groups: (1) re-entries to the healthcare system and (2) patient outcome. With re-entry in the healthcare system, several aspects have been

considered as subsequent events: second ambulance call or dispatch, ED visit, and general practitioner-visits [16,17,41,49,95–97]. The maximum range of the investigated follow-up time was 7 days. A large number of patients re-enter the healthcare system < 24 h following non-conveyance. Overall, there is a tendency towards increasing percentages for repeat access at increasing times after the non-conveyance encounter. For general populations of non-conveyed patients, subsequent visits to EDs within 24 h has been reported to be 5%

[16].

Furthermore, to date, no published study has investigated the reasons for patients to re-enter the healthcare system. Knowledge of this is essential to evaluate patient safety and non- conveyance. To what extent patients re-enter the healthcare system with symptoms similar to during the non-conveyance situation is not described either. Moreover, a re-entry could be the result of compliance with ACs’ recommendations given during the non-conveyance encounter. Therefore, in order to accurately describe non-conveyance, awareness and transparency regarding the challenges that accompany the use of a complexed outcome as

‘re-entries’ is essential. Follow-up after non-conveyance should be considered as basic and essential knowledge in order to develop future assessments and decisions with high patient safety. However, the lack of consensus and – as a consequence – the absence of valid

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quality indicators measuring patient safety complicates the development of non- conveyance.

The second recurrent subgroup in the follow-up of non-conveyance is factors associated with patient outcome. These are mortality, hospital admission, and to what extent patients suffer from recurrent symptoms. Mortality rate on general non-conveyance patient

populations have been described as low [16,38,85,95,96,98]. The same pattern is true for hospital admission following non-conveyance [16,17,37,38,41,85]. For specific populations of non-conveyed patients, elderly patients have been described as having an increased risk for both hospital admission and mortality [19,99,100]. As with re-entries in the healthcare system, patient outcomes must be interpreted with an awareness of the time factor. The challenges and thus difficulties in linking the outcome to the non-conveyance assessment increase as time from the initial assessment elapses [16]. Furthermore, confounding factors are to be controlled for when using hospital admission and mortality as outcomes.

However, due to methodological aspects, such as study design and data availability, this was not done in a majority of the earlier conducted studies concerning non-conveyed patients.

Regarding both the extent of non-conveyance and the characteristics and outcome of non- conveyed patients in Sweden, our knowledge is limited. In order to perform patient-safe non-conveyance assessments, further knowledge regarding patient characteristics and relevant points of outcome and thus a reasonable interpretation of these are needed.

2.9 NON-CONVEYANCE EXPERIENCES OF PATIENTS AND AMBULANCE CLINICIANS

Traditionally, a patient has been defined by the healthcare system and its representatives.

The patient’s role has been considered as one that engages a passive attitude towards one’s own participation in the provided care. In the work by Charles, Gafni, and Whelan [101]

regarding decision making in a healthcare context, the view of the patient as a passive recipient would be placed under the ‘paternalistic model’ of decision making. Thus, the patient is expected to adopt an inactive role in decisions regarding eventual treatment or upcoming care. The term ‘patient’ is not unproblematic, and in contrast to the paternalistic view of the patient, the caring science view of the patient advocates an approach in which the patient is explicitly considered as an important and active participant with situation- specific knowledge in the care meeting [102]. Furthermore, from a person-centred care

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perspective, the person ‘behind’ the patient has been highlighted and is viewed as a natural part of the care process and one who engages an active attitude towards the provided care [103,104]. Hence, both the patient and career have a need to understand and to be

understood. For these mutual needs to be managed and thus a caring encounter created, collaboration between the patient and the career is required to achieve the partnership, which is considered central within person-centred care [105]. Favourable conditions for the creation of a caring encounter are founded when the patient and carer acknowledge and thus have to respond to the mutual knowledge gap: a gap that can be decreased by the involvement of different perspectives. The patient possesses expert knowledge of how the situation is experienced and affects everyday life, and on the other hand, the ACs have medical and caring scientific expertise to contribute with [27]. In this thesis, a ‘patient’ is considered as a competent person with unique situation-based knowledge who is actively engaged in their care in the healthcare system in general and in the ambulance care context in particular.

Additionally, due to the Swedish National Audit regulation [23] regarding ambulance care, the non-conveyance assessments performed daily are most often performed by registered nurses in general and specialist nurses in particular. However, the results and implications stemming from this thesis are intended to be applicable to an ambulance care context in general and not to a specific profession. Caring for another person is not dependent on one profession; instead, it should be considered as the result of a respectful, mindful, and humble interaction between two or more human beings to reduce existential suffering and increase the individual’s perceived health.

The importance of well-developed nursing skills has been described as fundamental in succeeding with one’s assessments and non-conveyance decisions [106]. In the cited study, establishing a relationship founded on trust and respect with the patient and significant others was essential in order to feel confident in not accompanying the ambulance to the ED. To be taken seriously during the care meeting with ACs was highlighted as crucial, which could empower the patient’s own belief in their own unique resources. Patients also expressed the need to be confirmed by the ACs in relation to their feelings of insecurity in the experienced situation. On the contrary, if not being taken seriously by the ACs, patients expressed feelings of violation of their personal autonomy and in the long run, disbelief regarding their own view of what an emergency situation is [106]. Furthermore, ACs need

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many cases experience feelings reminiscent of patients’ feelings of anxiety and fear prior to the encounter with the ACs. Moreover, significant others can experience great caring responsibility for the patient, and thus, requiring an ambulance can be the result of a process involving feelings of vulnerability, helplessness, and the need to be relieved of a perceived great caring responsibility [107]. Similarly to the patients need of being taken seriously, significant others experienced increased suffering and powerlessness when perceiving an absence of openness and kindness from the ACs towards the patient [108].

While some research has investigated patients’ experiences of non-conveyance, limited attention has been paid to the ACs’ experiences of assessing and deciding not to convey patients to the ED. Ambulance clinicians have been found to experience an ongoing

struggle regarding their own and the patient’s expectations of the outcome of the encounter [75]. The importance of being aware of and involving different expectations concerning the outcome of the non-conveyance encounter have been expressed from the patient and/or significant others’ perspective. In case the ACs fail to do so, the patient’s and/or significant other’s suffering and feeling of loneliness could be exacerbated [108]. Conflicting

perspectives involving the ACs strive to provide individual care for every patient –

consequently resulting in a time-consuming non-conveyance assessment – and at the same time attempting to maximize ambulance resource availability for the general population can create frustration for the ACs [76]. Moreover, ACs experience misuse of ambulance

resources due to a discrepancy regarding the EMCC dispatch prioritization and the ACs’

assessment of the patient’s need for care. In contrast, conducting the non-conveyance assessments was described as difficult, complex, and challenging. A major responsibility came with the non-conveyance assessment and decision-process [76,77]. Furthermore, the ACs experienced a lack of formal support from the ambulance organisation concerning limited support from medical guidelines and the absence of a specific non-conveyance protocol [75]. In addition, similar findings have been presented in a British ambulance service context regarding the use of alternative care pathways [78,109]. However, despite the studies by Barrientos and Holmberg [75], Höglund et al. [76], and O'Hara et al. [78], there is still a lack of knowledge regarding ACs’ and patients’ lived experiences of non- conveyance in relation to an ambulance service in transition that tends to involve more than medical emergencies, acute illnesses, and conveyance.

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3 RATIONALE

As a consequence of the overall increased number of ambulance assignments in

combination with an increase of patients assessed as having non-urgent complaints, new demands are being made on the ambulance service and the ACs regarding patient

assessments and decisions. Alternative care pathways – excluding crowded EDs – such as non-conveyance have increased the last decade. There is a lack of use of non-validated non- conveyance protocols and triage tools. However, our knowledge regarding non-conveyance is limited: this includes both the patient’s perspectives, ACs’ experiences, and patient outcome from a patient safety perspective. Increased knowledge from an epidemiological and qualitative research perspective is needed to ensure patient safety.

4 AIMS

The overall aim was to explore situations when patients were non-conveyed. Furthermore, it was intended to describe ACs and patients’ lived experiences of non-conveyance.

Specific aims were outlined as followed:

1. To describe the prevalence of non-conveyance, investigate associations and compare patients’ characteristics, drug administration, initial problems and vital signs between non-conveyed and conveyed patients (Study I)

2. To increase the understanding of elderly non-conveyed patients, the primary objective of this study was to present the prevalence of older adult non-conveyed patients and their characteristics and, in comparison with younger non-conveyed patients, identify and describe the risk factors associated with ED visits, hospitalisations and mortality up to 7 days following non-conveyance. The secondary objective of this study was to investigate the probable associations between abnormal vital signs and ED visits, hospitalisations and mortality up to 7 days after non-conveyance among older adult non-conveyed patients (Study II)

3. To describe ambulance clinicians’ experiences of assessing non-conveyed patients (Study III)

4. To describe experiences of becoming acutely ill and not accompanying the ambulance to a hospital from a non-conveyed patient perspective (Study IV)

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5 ETHICAL CONSIDERATIONS

The Regional Ethical Review Board of Stockholm approved the PhD project in general and its four part-studies in particular (Dnr: 2017/2187-31). Studies I and II complied with the Code of Ethics of the Declaration of Taipei on health databases and biobanks regarding the dignity, autonomy, integrity, confidentiality, and discrimination aspects of handling data containing sensitive personal data [110]. In accordance with current procedures for implementing major registry studies in Sweden, informed consent was waived by the Ethical Review Board and was therefore not collected in Studies I and II. These two studies were further considered to be covered by the Swedish Personal Data Act's [111] 10§

eligibility basis, for which the current research ‘clearly weighs the risk of improper

intrusion of the integrity of individuals that the treatment may imply’ (PUL, 1998: 204, 10§

f). The data collection, subsequent data processes, and storage strictly complied with the newly established General Data Protection Regulation regarding security in processing personal information and data in registry studies. Adequate technical and organisational measures to ensure the integrity and safety of the studied individuals were taken by the entity principally responsible for the research, the AISAB. The Regional Health Care Data Warehouse (VAL), used in Study II, offered deidentified follow-up data on almost all healthcare provided in the Stockholm region [112,113]. Thus, ensuring the integrity by automatically encrypting social security numbers of registered individuals.

In Studies III and IV, ethical reflections and actions were applied in line with the Code of Ethics of the Declaration of Helsinki [114]. Written informed consent was obtained, and all the informants received verbal and written information explaining the aims of the

respective studies, describing actions that would be taken to ensure the confidentiality of the participants. Furthermore, information about the participants’ ability to withdraw their participation in the respective study whenever they wanted was provided. Moreover, although there was a risk that the informants might experience an inconvenience as a result of their participation in the interviews – such as feelings that they had shared too much sensitive information with the interviewer – no participants expressed such feelings.

Furthermore, regarding the risk that the interview could evoke memories from the

encounter with ACs that the informant did not regard as positive memories, measures were taken to reduce these risks by expressing in writing and speech that the informant ‘owns’

their material and that they determine if the information would be part of the study or not.

Regarding discomfort due to negative memories or events, I paid attention to various signs of discomfort during the interviews and was ready to take appropriate actions if deemed

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necessary. Offering the informant to take a break during the interview is an example of such a measure. All informants chose the place and time for the interviews. In Study III, all ACs were off-duty during the interviews. Following each interview, the recorded material and transcribed data were stored electronically. Confidentiality was maintained throughout the data analysis and the writing of the two article manuscripts.

6 METHODS

In the following methods section, the four studies will be divided according to the two research approaches used in this thesis; epidemiology (Studies I and II) and reflective lifeworld research (RLR) approach (Studies III and IV).

6.1 SETTING – THE STOCKHOLM REGION

The region of Stockholm is the capital of Sweden and has 2.3 million inhabitants. The geographical area of the region is approximately 6,519 km2 and covers both highly urban areas and less populated rural areas (the archipelago). A majority of all the region’s inhabitants live in surrounding municipalities outside of the Stockholm municipality. As a whole, the region of Stockholm is one of the regions in Europe that is growing most intensively. Population forecasts have claimed that an annual increase of approximately 33,000 inhabitants is to be expected until the year 2026. The need of healthcare among older adults (> 65 years) is expected to increase the coming years, the prognosis further indicates that older adults will annually increase by approximately 30%. Inhabitants aged 80 years or over will increase the most after 2020 [115].

6.2 HEALTHCARE SYSTEM OF THE STOCKHOLM REGION

The Swedish healthcare system is a decentralized and largely tax-funded system that the entire population should have access to according to the Swedish Health and Medical Services Act [116]. Good health and equal care for the entire population is the overall goal of the healthcare system. Furthermore, care must be given with respect for the equal value and dignity of all human beings [117]. Sweden is divided into 21 regional councils in which each region’s political leadership is responsible for the healthcare provided. The Region Stockholm Assembly is responsible for the largest regional healthcare system in the country [118]. The care offered ranges from non-emergency medical helpline to advanced specialist care at university hospitals. Approximately a third of all healthcare in the region is provided by private care providers. These providers can be found among general practitioners,

dentists, and physiotherapists, to name a few. However, private care providers also operate

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emergency hospitals, one of which is a trauma level one hospital. The number of ED visits amounts to approximately 550,000 per year within the region. Primary care is provided during workday office hours and amounts to approximately 4,560,000 visits annually [119].

6.3 THE AMBULANCE SERVICE OF THE STOCKHOLM REGION

The ambulance service of the Stockholm region is provided on a 24-hour, year-round basis and is fully financed through taxes and provided by three companies, of which two are private care providers and the third a regional care provider. Approximately 220,000 assignments are performed by 83 ambulances, three physician manned units, one

psychiatric emergency response unit, and one helicopter annually (an additional helicopter unit is deployed between 15 May and 15 September) [120]. The ambulance service is reached through the national emergency number, 1-1-2, and all ambulance assignments are dispatched through the regional EMCC. The dispatch operator decides whether an

ambulance should be dispatched using a symptom-based clinical decision support system called the Swedish Medical Index [121]. Each dispatched assignment is prioritized on a three-level scale, with the highest priority as 1 and lowest as level 3. Since 2005, national regulations have stipulated that at least one of the two ACs serving in the ambulance should be a registered nurse. Regional regulations within the Stockholm region stipulate that at least one of the two ACs should have completed an additional year of university training and hold a specialist nurse exam [122]. The specialist nurse is medically responsible within the ambulance team [123]. Older adults (> 65 years) represent half of all patients cared for by the ambulance service of the Stockholm region. Women aged > 85 years or over form the largest patient group cared for by the regions ambulance service [124].

6.4 STUDIES I AND II

Studies I and II both had a retrospective study design, as observational population-based (Study I) and cohort studies (Study II), respectively. Data were collected from several regional healthcare registers, although Study I only involve data from the ambulance medical records (CAK-net, Region Stockholm) in contrast to Study II, which involved data from both ambulance medical records and VAL. The latter automatically collects and holds data regarding the regional healthcare provided, ranging from out-patient care (e.g. primary care, ambulance service) to in-patient care [125], thus enabling follow-up.

6.4.1 Registers

The ambulance medical records (CAK-net, Region Stockholm) used in Studies I and II constitute information on several different patient demographic variables, such as social

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security number, age, gender, and residential address. In addition to this, the records also hold specific assignment information, such as assignment date, dispatch prioritization, several time variables, geographical area, prehospital assessment code, administration of drugs, actions performed, conveyance status, vital signs, and observations. Furthermore, all ambulance medical records consist of a narrative text section written by the responsible ambulance clinician. This section was excluded from the data extraction due to the large number of ambulance assignments included.

The VAL, used in Study II, automatically electronically records almost all healthcare utilization within the Stockholm region, hence constituting comprehensive regional healthcare data ranging from out-patient care (e.g. primary care, ambulance service) to in- patient care and enabling follow-up on an individual level. The social security number of patients is encrypted when a healthcare event is registered in VAL: it is automatically replaced with a unique patient identification number. Thus, identifying individual patients in VAL is not possible [112]. The use of VAL enables a validated and reliable follow-up of patients who utilized healthcare in the Stockholm region: this includes non-conveyed patients. As an example of the accuracy and validity of VAL, the Stockholm Regional Council uses data from VAL for updating regional healthcare use in the National Patient Register administered by the Swedish National Board of Health and Welfare [126].

6.4.2 Study populations

Table 1. Characteristics of study populations

Study Inclusion criteria Exclusion criteria

I (Figure 1) (1) Ambulance assignments performed by emergency ambulances

(1) Patient dead on ambulance arrival; (2) non-primary ambulance runs, excluding; intrahospital transports, physician-manned rapid response units, non-emergency ambulances and helicopters II (Figure 2) (1) Ambulance assignments

performed by emergency ambulances ending in non- conveyance; (2) patient age ≥ 18 years

(1) Missing or incomplete social security number; (2) For all the included study informants, only the first registered non-conveyance event during 2015 was considered

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Figure 1. Flow chart Study I

Flow chart over included and excluded ambulance assignments in the Stockholm region, 2015, in Study I.

Total ambulance runs 2015 n= 177.712

Ambulance runs meeting the selection criteria n= 170.361

Excluded ambulance runs n= 7351 (4.1%)

1. Dead on arrival/unsuccessful resuscitation, n= 1821

2. Intrahospital transports, n= 5530

Conveyed n= 146.758 (86.2%)

Non-conveyed n= 23.603 (13.8%)

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Non-conveyance assignments 2015 n= 23,603 (13.7%)

Exclusion step 2

Total excluded ambulance assignments, n=

5794

1 Missing or error in social security number, n= 947 (4.0%)

2 >1 non-conveyance assessment during 2015, n= 3380 (14.3%)

3 Age < 18 years, n= 1467 (6.2%)

Included, only first non- conveyance assignment

n= 17,809 (75.4%) Total ambulance cohort 2015

n= 172,548 (100%)

Exclusion step 1

Conveyed patients, n= 148,945 (86.3%)

Figure 2. Flow chart Study II

Flow chart over included and excluded ambulance assignments in the Stockholm region, 2015, in Study II.

6.4.3 Data collection

The data sources in Study I constituted of ambulance medical records registered in CAK- net from 2015: these were retrospectively collected. The research group received the data material in an Excel file. I performed all preparatory work before exporting the final data set to STATA.

Study II involved data material from both CAK-net and VAL. These were successfully linked by the help of SLL-IT and the development unit – and resulted in a dataset

consisting of both ambulance medical record data and comprehensive regional data on ED visits, hospitalisations, and mortality up to 7 days after the index event. The index event was defined as the day the first non-conveyance assessment was registered for the unique patient. For all study participants, only the first registered non-conveyance event during 2015 was included in the final dataset.

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6.4.4 Study designs and outcomes

The study designs of Studies I and II included an observational population-based study (Study I) and a retrospective cohort study (Study II).

Table 2. Overview of study design and outcomes in Studies I and II

Study Study design Outcomes

I Retrospective observational population-based study

Primary outcome – prevalence of non- conveyance

Secondary outcomes – associations and comparisons of patients’ characteristics, drug administration, initial problems and vital signs between non-conveyed and conveyed patients

II Retrospective cohort study Exposure group: non-conveyed patients aged  65 years in the Stockholm region

Comparison group: non-conveyed patients aged 18-64 years in the Stockholm region

Primary outcome – prevalence of older non- conveyed patients, comparison of covariate variables and short-term outcomes (ED- visit, hospitalisation and mortality) between the exposure group and the comparison group

Secondary outcomes – abnormal vital signs and 7-days hospitalisation among the exposed group

6.4.5 Statistical analysis

All statistical analyses executed in Studies I and II were conducted by using STATA version 15.1 (StataCorp. 2017; Stata Statistical Software: Release 15. College Station, TX:

StataCorp LLC). The significance level was set at 0.05, all tests were two-sided.

Descriptive statistics were used in Studies I and II – reported as percentages, interquartile range (IQR) or median where applicable. Measuring differences between two groups of patients were performed by using χ2-tests, Cramer’s V-tests and t-tests where applicable. In both Study I and II multiple logistic regression analysis were performed. Logistic

regression manages binary outcomes, i.e. presence or absence of the event of interest, e.g.

disease or death. The regression coefficient generated from regression models are often presented as an odds-ratio (OR), which is easier to interpret than the log odds ratio. The measure of association between an exposure and a binary outcome is presented as an OR.

The value of the OR can be between 0 and infinity. The presentation of an OR is joined by the 95% confidence interval (CI) for that OR. If the 95% CI includes the value 1 (one), then

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the OR is not statistically significant, i.e. there is no difference in exposure and outcome [127]. The main statistical methods are described in more detail in the respective study.

6.5 STUDIES III AND IV

Studies III and IV were both conducted using an RLR-approach. ACs were interviewed in Study III, and patients being non-conveyed were interviewed in Study IV.

6.5.1 Reflective lifeworld research and preunderstanding

In order to fulfil the respective aims of Studies III and IV, a scientific approach that makes it possible to describe meanings in a complex phenomenon was chosen. The RLR approach is suited to studying complex phenomena that might have existential meaning for humans [128]. A scientific theoretical basis and methods and principles for implementation are offered through the use of the RLR approach. A brief introduction to the ontological and epistemological points of departure forming the foundation of phenomenology will be provided below. Through the work of the German philosopher Edmund Husserl conducted during the early 20th century, the meaning of the lifeworld theory for understanding how humans experience their lives based on a phenomenological perspective was introduced.

With the goal of increasing knowledge regarding a specific phenomenon, according to Husserl, one should consider the ‘things’ themselves. From a phenomenological

perspective, studying ‘things’ means studying how phenomena are experienced by humans [129].

In the light of Husserl’s views on experiences, insight is gained into the theory of the intentionality of consciousness, in which Husserl argues that human consciousness is always directed towards something. In addition, when something is experienced by someone, it is always experienced as something. Meaning arises in relation to what one’s consciousness is directed towards. Being aware of what one’s consciousness is directed towards is an active process in which the individual leaves the everyday default setting, called ‘natural attitude’ – described by Husserl as ‘unreflective’ – in which our existence, environment, and experiences are taken for granted [129]. The researcher needs to actively leave the everyday default mindset and thus adapting to a reflective approach in which experiences are not taken for granted. A prerequisite for this adjustment of mindset is becoming aware of the fact that and how we experience things.

The researchers’ understanding of the phenomenon can be deepened through the

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These principles are applied in order to achieve objectivity and to not make definite what is indefinite [130]. By actively reflecting and questioning (slowing down) the process of understanding, the impact of the researcher’s preunderstanding is confined (bridled) and thus not allowed to uncontrolled influence how we understand the studied phenomenon. It is not possible or even desirable to exclude our preunderstanding, instead we should aim at controlling its impact on our understanding [131].

6.5.2 Managing my preunderstanding

Prior to conducting both Study III and IV my preunderstanding was outlined. On the one hand, I had lived experiences of non-conveyance through my clinical background as a specialist nurse in ambulance care. Hence, I had conducted countless non-conveyance assessments during my ten years in the profession. On the other hand, I had lived

experiences of working as lecturer at a university giving the specialist nurse education in ambulance care. In addition, I had a good friend who were non-conveyed and subsequently admitted to hospital. These three lived experiences had given me a preunderstanding consisting of different perspectives on non-conveyance that could affect my research if not reflected upon and bridled. Prior to both study III and IV I wrote down my

preunderstanding in order to become aware of it. I actively tried to achieve a reflective, open, and bridled attitude during the data collection and analyses of both these studies. My preunderstanding was used in the creation of the selection templates by discussing possible important factors to include for establishing a wide variety of lived experiences among the informants. My supervisors helped me bridle my preunderstanding several times during both studies by identifying situations where my preunderstanding took the over hand. In the beginning of both data collections, my supervisors read several of the transcribed

interviews and gave me feedback. Hence, resulting in an awareness regarding my

preunderstanding during the remaining interviews. During the analysis, I tried to achieve a bridled attitude. Though, my preunderstanding fastened my understanding of the

phenomenon studied in study III and this was identified with the help of my supervisors. A curiosity about my process of understanding was established when my understanding was questioned, hence resulting in new perspectives of the studied phenomenon being revealed.

6.5.3 Informants

6.5.3.1 Study III

The investigated phenomenon in Study III was ACs’ experiences of assessing non-

conveyed patients. It is of the utmost importance within the RLR approach that researchers

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seek to capture the phenomenon from all its possible variations. Prior to the data collection, discussions within the research group was performed regarding outer variations that were important to capture. These variations were placed in a selection template used during the recruitment of participants: 1) the geographical location of the ambulance unit (highly urban, urban, or rural area), 2) the ambulance company, 3) AC gender, 4) AC age, 5) ACs’

years of working experience, 6) day or night shift, 7) work or week day, and 8) ACs’

formal education training. All these variations were fulfilled during the data collection. The study was approved by the heads of department for all three ambulance companies,

respectively, before the recruitment process of informants and data collection was initiated.

Both written and verbal information was distributed among all three companies. Eligible ACs were those who had conducted non-conveyance assessments within the Stockholm region. A total of 13 ACs reported a willingness to participate following advertisement of the study. Of these, 11 gave approval. The median age for all informants was 39 (range 30–

51 years), nine were specialist nurses, six of the informants were female, and median work experience in the ambulance service was 11 years for all informants.

6.5.3.2 Study IV

The phenomenon of interest in Study IV was ‘becoming acutely ill and not accompanying the ambulance to a hospital’. Similar to Study III, a selection template was designed following internal discussions within the research group regarding outer variations that were considered to be important to capture when studying this phenomenon: 1)

geographical location of the patient (highly urban, urban, or rural area), 2) ambulance company, 3) the patient’s gender, 4) the patient’s age, 5) chief complaint, 6) assignment during day or night, and 7) work or week day. All these variations were fulfilled during the data collection. The study was approved by the heads of department for all three ambulance companies, respectively, before the recruitment process of informants and data collection was initiated. Both written and verbal information was distributed among all three

companies. Ambulance clinicians were supposed to present the study to non-conveyed patients who met the inclusion criteria once the non-conveyance decision had been taken. If the patient was interested in hearing more about the study, further information would be provided by me over the telephone. Patients eligible for participation had to fulfil the inclusion criteria that they had been non-conveyed. Moreover, they could speak either Swedish or English. Exclusion criteria were as follows: age < 18 years, clearly influenced by alcohol and/or narcotics, and patients who could not fully understand oral and/or written information about the study (e.g., due to cognitive impairment). In total, 11 non-conveyed

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